Living with Lyme disease

DANVILLE — Lyme disease has pretty much taken over the lives of the Dorow family.

Suzanne Laurent

DANVILLE — Lyme disease has pretty much taken over the lives of the Dorow family.

Thaiadora Katsos Dorow and her two young children, Luke, 6, and Lexi, 3, suffer from stage 3 Lyme disease. Dorow wasn't diagnosed until after the birth of Lexi, and it is believed her children contracted the disease in utero.

Ticks pose the threat of Lyme disease through the summer. The Centers for Disease Control reported that in 2011, 96 percent of Lyme disease cases were reported from 13 states including Maine and New Hampshire. The Granite State has one of the highest incidence rates in the country, ranking third highest in 2011.

Lyme disease is caused by the bacterium Borrelia burgdoferi and is transmitted to people by the bite of an infected black-legged tick, also known as the deer tick. The greatest risk for Lyme is from May to August, when the black-legged tick is in the juvenile stage. It is the size of a poppy seed and very difficult to detect, so individuals may be unaware they have been bitten.

Ticks that transmit Lyme can also transmit other diseases, such as anaplasmosis and babesiosis. Although not as common as Lyme, both diseases can also cause illness.

A difficult diagnosis

"Seven weeks after Lexi was born (in September 2009), I had eclampsia and was hospitalized," Dorow said. Eclampsia is a serious, life-threatening condition marked by seizures in pregnant women.

Dorow, who has a doctoral degree in education, had been a principal at the Charlotte Avenue Elementary School in Nashua. Before that she was a principal in North Reading, Mass., and a vice principal at the Lincoln Street and Main Street elementary schools in Exeter.

In April 2010, she resigned from her Nashua position because of symptoms of memory loss similar to early dementia. Six months later, in October of that year, she woke up "deathly ill."

"I drove myself to the clinic thinking maybe I had H1N1 or some other awful disease," she said.

Dorow was hospitalized and worked up for stroke and heart disease.

"They were throwing all kinds of diagnoses at me," she said. "They saw some fluid in the bottom of my lungs and thought it was pneumonia."

"Finally, a light bulb went off with one of the doctors who personally had someone in the family with Lyme," Dorow said.

She was diagnosed with late-stage Lyme disease, and Dorow, now 44, is unable to work.

"Everybody is pretty familiar with basic Lyme disease," she said. "That's called acute Lyme disease — the kind that you get when you either find a tick on you or you get a bulls-eye rash."

Patients diagnosed at this early stage are usually treated with 28-day round of antibiotics.

Dorow, who loved to explore the woods with her husband, Dan Dorow, and her two older stepsons, said she may have removed a tick once or twice, but doesn't recall having the signature bulls-eye rash.

"But, I must have contracted the illness years ago," she said. "You don't always see a bulls-eye, and you don't always know that you have Lyme disease. Once it becomes a case of late-stage (or chronic), you are in for a tough, life-long, physical, medical, emotional and financially expensive battle."

Whitney Howe, a vectorborne disease surveillance coordinator with the state's Department of Health and Human Services, said 60 to 80 percent of people bit by a tick will manifest with a bulls-eye rash.

"People should always do tick checks after being in the woods or tall grasses," she said.

Dorow said during her first pregnancy she became violently ill.

"I could no longer teach graduate school classes, giving up something I dearly loved to do, because I spent more time spinning in the stairwell, holding onto the walls, needing to be rescued," she said. "I'd park my car in random driveways with disabling migraines, and wait hours for someone to find me."

Her newborn son was in the hospital with unexplained fevers, rashes, pulmonary issues and rare afflictions.

"It was after my second child was born that I began struggling from profound fatigue and varied bizarre medical conditions," Dorow said. "I had become neurologically challenged, with a brain that failed me in a job that required me to be at the top of my cognitive game. I had no choice but to resign."

Living with Lyme disease

Late-stage Lyme disease is complex, especially in young children, Dorow said. She and her children also suffer from co-infections, including Babesia, Bartonella, mycoplasma pneumonaie and Rocky Mountain Spotted Fever. They are being treated with oral antibiotics and holistic treatments.

Dorow believes she has had the disease for at least seven years and that her two pregnancies pushed the dormant state of Lyme into an active state.

"A challenging part of having Lyme disease, for me, is that I look just like you," she said. "Looking at me, you might never know I had it. There are some days I feel totally normal, and on these days it makes it really difficult to explain to others when they look at me and ask what the big deal is about Lyme."

But, she said, those days are few and mostly are limited to hours within the days.

"More typically there are days that I barely brush my teeth and I have to crawl back into bed," she said. "A lot of the time I am just not feeling well."

Exhaustion, joint pain, "ice pick" pains in her head and memory gaps are just some of the ongoing symptoms Dorow copes with on a daily basis. Her children, too, suffer joint, muscle and belly pain.

"They don't understand the incredible fatigue that leaves them laying on the floor for hours in between minutes of playtime while their friends play around them," Dorow said.

Dorow said Lyme disease tests can come up negative and the patient needs to ask for treatment if they have symptoms. She also cited a recent book, "No Picnic: An Insiders Guide to Tickborne Illnesses," by PJ Langhoff, which states ticks can transmit upon attachment and even before attachment.

"If you are sick and think you have Lyme disease, even if you have never seen a tick on you, it is critical for your doctor to treat the symptoms simply because we live in an endemic area, and the chances are likely that you were bitten by tick," Dorow stressed.

"If you find a tick on yourself or child, it's important to call your doctor and have the tick tested."

The best prevention is to use an insect repellent. Howe recommends products specific for ticks. A good resource can be found at the Environmental Protection Agency's Web site where a person can look up specific repellents for ticks or other insects. It gives brand names and length of time the repellent is effective. This can be found at http://cfpub.epa.gov/oppref/insect/

Dorow recommends finding a local support group if diagnosed with Lyme disease. "Your network is invaluable for your recovery," she said.

An organic defense

Dorow's husband started a farm raising chickens, turkeys and guinea fowl to help his family counteract the disease.

"He provides us with organic meat and eggs and the guineas eat all the ticks in our yard," Dorow said.

The deal with Lyme

Thaiadora Dorow invites the public to follow her personal Facebook page for posts about her life with Lyme disease and for her latest research information. Visit www.facebook.com/WhatsTheBigDealAboutLyme?ref=html

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